I feel strange, am confused about how fibro afects us

Discussion in 'Fibromyalgia Main Forum' started by rosemarie, Jun 28, 2013.

  1. rosemarie

    rosemarie Member

    I am so confused lately. I need to know if fibro really makes me feel like this or if it is all in my head. ur weather has been HOT and dry and my body aches so much more than in past summers. I don't sleep well at all and when I do sleep, I find my self feeling so sleepy that I can't keep my eye's open and I have to sleep . I am so tired of all this aching and fatique that I want to scream but there is no point in that as it does not help.

    Is feeling more pain and fatique when it is hot a part of fibro? I don't understand why suddenly I get so sleepy that I can't stay awake is this too a part of fibro? I am so irrated at my rehumy as he never talks about the above issue's and if they are a part of living with fibro and it really stress's me as I don't know if all these things are a part of fibro.
    I know that I have most likely asked these questions before but my brain is not working well and I can't remember the answers.

    I have had a rough time of things in the past 9 months , like having a root canal and two days later ending up in the hospital with Septic penumonia and a rapid heart rate. Now every time my heart race's I panic and think some thing is wrong with my heart. I have had four EKG's and my heart is fine, but I still panic when it race's. since the pnuemonia I have not been active I was so weak for months after that I got into a pattern of not walking around much or doing any thing that makes my heart race and I know that it is not good for me to be so inactive , I need to know that some one understands how scared I am and have been due to this illness.

    Then January my mom took a turn for the worse and past away on Feb 2nd. I have not paniced , and cried my eye's out as I know that she was in so much pain and so unhappy that she could not do any thing she wanted to do. It was so hard to watch her slip away from us but she had been doing that for the past few years. I feel quilty that I have not felt so sad that she is gone.

    But I can't feel that way, when you have been a caregiver for as long as I was for mom and you watch them slow down on eating and drinking, not wanting to do any thing but sleep 24/7 death is not so bad as watching her live with all the pain,and the knowledge that she could not do the things she had done for most of her life.
    I miss her and being able to talk to her but I dont' feel sad and depressed about her death. IT is all the darn stress that came after when my brother took control of MOm's money and estate. IT is a nasty family issue and I have to just learn to let the anger go or it will make me feel worse.

    Could how I have been feeling be made worse by all the stressful things I have been thru in he past 9 months?

    My arthritis in my knee's is worse and the pain from it is unbearable at times , gets really bad when I walk more than around my house. My muscles, bones, nerves, body just are in a state of constant irratation, pain, and exhustion, then add that I just had a tooth that abcessed and now I have learned that I need 4 teeth pulled and a partial denture put in. The kicker is I have no insurnace , no money to pay for it and I am still paying off my hospital bill and will be for the next 8 months. I have talked to my DH and have learned that his insurance does not pay for his diabetic pump supplies, and pays only a small portion of his insulin , I thought I paid thru the nose for my meds. but my hubby pays 3 x as much as I do. So he really does not have the money to hel me pay for my dental and medical bills.

    I read the letter to normals that was written here and I found that my family still does not understand when it comes to taking pain meds. My middle daughter wants me to stop taking all of them. But that won't happen. In the past few years I have reduced the amount of pain meds I take in a huge way. About 4 years ago I was taking 500 mgs of MScontin, and about 120 mics of MSIR. I have reduced that to 60 mgs of Mscontin 2 x a day and I have changed meds and take hydromophone 4 mg 2 x daily. The soma , xanax and visteril have stayed the same. I reduced the pain meds because I was nottaking all the pills and had three months worth of mscontin in my home. I felt that it was not a good idea so I slowly reduced them to what I take now.

    Now my big issue is what am Igoing to do when I have to have my teeth pulled and am in more pain and I don't think my rehumy will give me a larger dosage of my pain pills. It terrifies me to think of how much pain I will be in not just from the extractions but from that added fibro pain that I get when I have been ill or in more pain.

    Sorry for whining, I don't understand why I can't remember what fibro does to me and why now is the heat making me hurt more , ache more deeply, and in parts of my body where I have titaimum, plate and screws the nerves have gone wild and hurt like the devil. I have gotten so senstive to sounds like microphones, lights, crying babies,being around alot of people who are weqaring perfumes all send me up the wall in pain and discomfort. I dont' attened church due to the noise level and I don't go out much due to the sounds and smells that drive my bod nuts. I don't know if I am discribing how I feel very well or not. I feel like some thing has changed in teh way fiibro affects me and how the chronic meyofacial pain affects my body. I am having different symptoms along with the old ones and just don't understand why?

    Thanks for listening to me vent.
    Hugs to all,
  2. IanH

    IanH Active Member

    Rosemarie, lets address your questions first:

    Is feeling more pain and fatique when it is hot a part of fibro?

    For many, YES! It seems that FM does affect temperature control probably because the thyroid gland is affected by your syndrome. For me the heat was unbearable and made me much worse. My GP failed to understand this way back then (he knew nothing about FM, thought it was psychological back then). Now I cope with any temperatures and no longer have the thyroid dysfunction symptoms: vertigo when temps went above 25C, very hot hands and feet, no blankets on the bed, focusing problems, sleep disturbances worse.

    I don't understand why suddenly I get so sleepy that I can't stay awake is this too a part of fibro?
    If you are not sleeping well then yes you may get very sleepy during the day.

    Now every time my heart race's I panic and think some thing is wrong with my heart.
    Tachycardia is part of FM and ME, worse when you lie down means you may have ME. These are the first symptoms I got with my ME/FM but ECG showed normal but fast heart rate. My daughter has similar but she also has the classic short PR interval. Panic feelings is often the result of tachycardia because it also takes your breath away. However in most cases tachycardia is not unhealthy, nor is beat changes. In fact people who notice their tachycardia and beat changes often have healthier hearts. Also poor sleep will increase your tachycardia.

    Could how I have been feeling be made worse by all the stressful things I have been thru in he past 9 months?
    I would think so, as FM is a stress related illness ie your nervous system is already hyper-alert so adding stress makes you feel worse or relapse with many of the FM symptoms.

    It terrifies me to think of how much pain I will be in not just from the extractions but from that added fibro pain that I get when I have been ill or in more pain.

    Contrary to common belief few people with FM are more sensitive to pain. People with FM have more pain due to disturbances in the nervous system which are mainly inflammatory but that does not mean you will be more sensitive to pain. Hopefully the dental work will be no more painful than anyone without FM. However I know how dentistry is quite stressful for some. Interestingly some people with FM find that their FM pain (ie widespread pain) is reduced when they are subjected to other anatomically induced pain or injury. However they do find their usual FM pain returns when the other pain subsides.
    Alyssa-Admin likes this.
  3. gb66

    gb66 Well-Known Member

    Rosemarie, I've been wondering how you are doing. Sorry you're having so many difficulties lately. My FM and CFS did get worse over time and more symptoms have appeared. I'm now being checked for Lyme and co-infections and have tested positive for Ehrlichia probably from tick bites years ago when I first became so ill.

    About the extractions, I just had one a couple of months ago and did fine with it. The pain was not bad at all. The first day was painful but not even as bad as a migraine, and the worst of it was just one day. I didn't take anything for it but over the counter medication that I always take for my fibro pains.

    There was lots of swelling and bruising on the side of my face where the extraction was and it lasted about a week. I also need two more extractions and a possible root canal/crown, as well as another cavity. They said I have gum disease also and need to have scraping of my gums. They quote for all of this work is, are you ready for this, $4,400. No dental insusrance either.

    Know that you're not alone in all of these problems. Life is difficult even without illnesses but I know how hard it is for those with all these pains and sicknesses to deal with. We have to just be here for each other and keep on going. It's got to get better, right? Hugs, GB66
  4. rosemarie

    rosemarie Member

    IanH, & gb66,
    Thank you for your thoughts about my post. Last night was not one of the best either. I had picked up some
    scripts and one had jumped in price from $17.13 to $45.00 , I was in shock at the $27 increase. I called my insurance who informed me that Walmart's price for one of the meds had increased in price, so the $17.13 was teh cost last month this month the cost of the drug is $57.00. As I was talking to the insurance rep she said that she is going to request that the tier be changed from a tier 3 to a tier 2. That means a big change in the co-pay, the teir 3 is $45.00 and the tier 2 is $6.00 so i am praying that they will reduce the tier level so I can afford to buy this med. But who knows if the insurance company will approve this change, so I called another pharmacy in Logan and asked them the cost of the drug , I found out that it is $25.00, so I will be changing pharmacy's if the teir levei s denied. Of course I will make sure that the other scripts that I fill this time of month are also the same $6.00 co-pay they are now.

    Last night I was having the worst pain in my hip muscles and in my groin muscles, also my arms and shoudlers were aching deep inside the body , it almost felt like some one was pulling them off my bones. I felt like I had really over done it in a workout and I haved not worked out. I have noticed this when the wweather has pressure changes. For some reason it just makes me ache even more. I feel like I have been broken in places.

    Thanks for your thoughts,
    Hugs Rosemarie
    UVAMOMB likes this.
  5. sunflowergirl

    sunflowergirl Well-Known Member

    thank you Ian for that very good breakdown of what we go thru. My heart rate also increases in the heat as does feelings of lightheadedness....I try to stay indoors with the AC going, sitting in front of a fan. I thought I was alone with suffering in the heat.....misery loves company but I wish we all were feeling better.
    UVAMOMB likes this.

    UVAMOMB Member

    I was just diagnosed with tachycardia. I have had FIBROMYALGIA, CMPS, severe DDD and cervical, bilateral knee, hips, hands severe arthritis. I am so sorry so many of you have tachycardia. I have had Mitral Valve Prolapse, or at least was diagnosed with it, when I was pregnant at 25. I was just started on something for the tachycardia. I also have hypothyroidism and take Levothyroxine. Thank you all so much for sharing; it really helps. I am so sorry you have had so many months of exacerbation of your symptoms. I had all of my teeth pulled as well. Pain was quite tolerable. You will do fine. Oh, I recently had surgery for Achalasia and GERD, a umbilical and hiatal hernia repair. I had bo idea so many with Fibro nand CMPS have GERD either. Have you applied for insurance through the Affordable Care Act? From my understanding, it can be affordable. I hope you have twice as many better months. Take care.

    UVAMOMB Member

    I spoke to my pain management doctor and she said that tachycardia is NOT caused by pain per say. She said, of course, when your pain is bad, your heart is going to race, but not like the tachycardia I am having 24 hours a day, so please get it checks out. She reiterated what I have always been told and that is DO NOT JUST BLAME EVERY SYMPTOM, NEW OR OLD, ON FIBROMYALGIA. I am seeing an Invasive Cardiologist.
    Hope this helps you. Gentle hugs to you all and God's blessings always.
    Alyssa-Admin likes this.
  8. Alyssa-Admin

    Alyssa-Admin Active Member

    Hi there, firstly, I hear you loud and clear - I think most of us have questioned what is going on for them, particularly as some days are better than others as well...you start thinking, 'Is this just in my head? Am I not pushing myself enough and am really just lazy?' For me, using the FibroMapp app helped me hugely because I was able to track everything from flare ups, sleep, meds, activities and a journal, and from there it creates reports - I fully believe that we all have patterns with pain and sleep etc, and it is understanding ourselves better as well as having our doctors be aware of exactly what is going on...believe me, once I sent in my first report to my GP she was on the phone to me, as she didn't realise the extent of what was going on for me on a daily basis...very hard to do when your appointment is 20mins long!

    As UVAMOM8 stated above, always get things checked out if your doctor is just blaming everything on fibromyalgia...because that is not a good doctor - that is a lazy doctor. Most of the people I know have gone through at least 4 different GPs to get one who understands about Fibro and is empathetic and helpful as much as possible. In regards to your rheumy, a survey was taken in Canada in regards to rheumatologists and fibro...something like 72% said that they are unable to help fibro patients and that instead of seeing a rheumy, which is the protocol, that a neurologist is the much better bet...but that rarely happens - at least, not in the UK where I am from .,,

    What I can also tell you and many of the people on this forum will agree with, is that we have learned that if we want to help ourselves and heal ourselves, it is outwith the medical profession and many take supplements for fatigue, pain, brainfog and also things like methylation -getting your oxygen starved muscles working properly. Candida overgrowth is also an issue for quite a few of us, as our immune systems are not great, and many have been on a lot of antibiotics...which kills off the good bacteria and allows the bad/candida bacteria take over. If you experience quite a few yeast infections (including mouth, throat, groin, under breasts, skin folds, athlete's foot - then these are signs of a candida overgrowth. Which needs to be killed off. Chances are you might also be eating foods to feed the yeast if you
    are eating bread, fungi (mushrooms), sugar, and many other things...

    Food in itself can have drastic effects on our bodies...eating processed foods (I know, they are fast and cheap and easy!), nightshade vegetables (tomatoes, potatoes, eggplant, goji berries and several other things) can cause pain and a flare up.

    For me, heat and humidity and damp all affect my pain levels...I find heat exhausting.

    Lastly, here is a list of coexisting conditions with FM...http://www.inspiredlivingwithfibromyalgia.com/2013/04/200-symptoms-of-fibromyalgia.html

    The best advice I can give anyone is that the immerse themselves in research and get a better understanding of what options are available, beyond western medicine. The other thing I would recommend is to look for a functional medicine doctor...who will generally test you for things like food intolerances, lead poisioning and many other important things. They can also tell you what supplements you are most likely lacking in...for many of us B12, magnesium, potassium, Vitamin D are just a few things that many of us are deficient in.

    So! Lots to think about and read!

  9. mamie43

    mamie43 Member

    Hi Rosemarie,

    Sorry that you're feeling so bad. It can be a living hell! When I get dental work done I always take Advil or Motrin. I usually take 2 pills of 400mg each every 6 hours. I've tried Tylenol and my narcotic pain pills without success.

    Gentle hugs,
  10. shaquiradavis

    shaquiradavis Member

    soma is for Instant muscles pain relaxer!
    You can order soma online if you suffer from muscular stiffness. Soma contains carisoprodol and reduces muscular fatigue due to stress.